Because Life with Still's Can Still Be Life

Aintree Appointment: Second Opinion on Treatment Options

Back in September, when my Rheumatologist confirmed that the latest in a string of biologics (Infliximab), wasn’t working, a couple of other doctors were brought in on my case. They discussed my treatment options between them and it was decided that I would try Humira as a last ditch attempt, while being referred for Stem Cell Therapy / Bone Marrow Transplant. The reason I say ‘last ditch’ is that I just don’t seem to be responding to the biologics anymore, possibly because I have built up antibodies to certain things or maybe because I have more than one active inflammation ‘pathway’ to block.

My Rheumy admitted that he wasn’t very optimistic about Humira longterm but felt that it may just tide me over long enough to get the SCT/BMT arranged. I have my first appointment with the SCT/BMT team on the 28th November but also received an appointment to see one of the other Rheumatologists, Professor Moots at Aintree, today and felt that this would be a good opportunity to discuss my treatment options again and hear a separate opinion on things.

It was a long afternoon. I was given a questionnaire to fill in about my daily functions and ability and felt a bit uneasy at seeing my new flat folder of notes instead of the stacks I have at my own Rheumatology department. What if this doctor knew nothing about me and I had to start from scratch? I’d been waiting for over an hour when a nurse came to talk to me and explained that since the Professor’s clinic was running quite late I would have to see the registrar. Obviously, as far as they were concerned, I was just another new patient and I had a struggle to tell her the reasons why I needed to see the Professor. Not wanting to go into too much detail in front of a waiting room full of people, I think she thought I was just being awkward but eventually she agreed to let me wait the possible further two and a half hours.

I got a bit tearful at that point. I realised how much I had resting on the appointment and started to wonder if maybe I’d built it up too much. I was suddenly convinced that the doctor wouldn’t have time for me; by the time I saw him (it was already after 4pm) he would surely be wanting to go home and have his tea, not discuss a complicated case that suddenly appeared in front of him…

But I was wrong on that count thankfully. When I entered the room he had some letters from my Rheumatologist in front of him and reassured me he was familiar with my case. I can’t tell you what a relief that was. He went over my current medication and also my responses to medications I’ve tried in the past, then said I had three main options:

1. The Stem Cell therapy: He asked how I felt about this and I replied that I was obviously daunted by it and that I was also concerned about the effect it would have on fertility, since we still hoped to have a family one day. As soon as I mentioned this, he talked about referring me to an Obstetrician and said that maybe it would be better to consider the other options available first, including getting pregnant in the near future – he actually said he would be happy to prescribe pregnancy and that there was a chance of remission but even without it that I shouldn’t dismiss the idea. He told me that as a young, engaged woman with family plans, the Stem Cell therapy should really be a last resort. Yes, it may still come to that at some point, maybe even soon; but those plans made trying even the tiniest possibility worthwhile. And I totally agree.

2. Humira: Again, he agreed that it was a longshot but one worth taking. I mean, I haven’t got much to lose from trying have I? I responded to Enbrel for about seven years and Infliximab for a few months; Humira is a similar drug, so chances are I’d have some luck with it. The application went in during my hospital admission back in September, so I should hear something about starting this very soon.

3. Rituxan: This is another drug that was mentioned by my own Rheumatologist but for some reason he went with Humira instead, perhaps because of previous anti-tnf success. Rituxan works in a different way to the other biologics I’ve tried but is not usually used in Still’s Disease as there is little / no evidence of it helping. However, I tend not to respond typically anyway so I wouldn’t rule it out completely. The other thing he said about this option is that Rituxan can actually reset your immune system after wiping out your B-Cells. This could mean that the antibodies I have formed would disappear and so biologics that helped me in the past, could potentially work again. This is very appealing to me and something that I’m going to look further into. Even if the Rituxan itself didn’t help my Still’s, I could benefit greatly from this immune system reset – I guess it’s just a matter of what the chances of that happening are and how long it would take.

I also asked about the remaining two ‘current’ biologics I haven’t tried – Cimzia and Simponi, both of which received a similar response to Humira – they are very similar drugs, but there is a small chance that the difference between them could make all the difference to me. Then I mentioned the suggestion of combining biologics. For anyone else who is curious, the reason that this isn’t really an option is that despite blocking two separate inflammation pathways, the improvement in people’s overall condition is minimal but the occurrence of side effects is much greater and more severe.

So that was it really, apart from the fact that he has also referred me to an Obstetrician that specialises in pregnancy in people that have inflammatory disease – the before, during and after care. This will give me chance to discuss my concerns about having a family as a whole, because they’ve always been there; it’s just that the prospect of the chemo brought them to the foreground. Maybe that’s a good thing.

My plan for now – get started on Humira, go to the appointment at Sheffield to hear about the Stem Cell therapy, speak to the Obstetrician in the new year. Look into trying Rituxan after that if needed. Any decision on the Stem Cell therapy etc will hopefully be able to wait until after then.

Definitely feel a bit happier and more like I have options available,

We can but try!

L

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6 Responses

It sounds like it went fairly well then! I’m pleased that you have options to consider and agree it is worth trying the remaining biologics before resorting to SCT. LOL you will soon be a real biologics expert 😉 there’s something to add to your CV!

It’s also really encouraging that the doctor sounds quite positive regarding pregnancy. Not done too much research into Rituxan myself, but it was definitely mentioned to me too at a consultation with my Rheumy when we were considering which drug to try after the anti TNF’s didn’t work for me. I also met a girl (with RA) when I was in hospital a couple of years back who seemed to be doing really well on it.

Hope you are keeping ok otherwise – have you been doing much wedding planning? 🙂

I definitely feel a lot more optimistic about things. I know that there’s still a big chance that the medications won’t help and it’s easy to forget how frustrating it is to be up and down, on and off things in the trial and error process; but, I have been without any sort of biologic since August, so I feel trying something has got to be better than nothing. I need to look into the Rituxan more and will post what I find, as the immune system reset idea was totally new to me!

We have been visiting wedding venues this past week, which has been fun but exhausting! We had a look around our favourite venue last night and fell in love with it as soon as we stepped through the door. Typically, it is the most expensive too, so we need to decide if we want to spend that much – will be hard not to get carried away because I know we both have our hearts set on it now. I actually have a post drafted but haven’t managed to finish it yet, will try and get it up with some pictures – some positive news for a change!

It certainly is easy to forget how difficult things can get, especially when you’ve had any sort of reprieve! Are you just managing on the pred for now then? Incidently, are you taking anything to protect your bones (other than Adcal)? I’m considering starting biphosphonates after a recent bone density scan but have yet to discuss the options with my consultant.

I wasn’t aware of the potential to re-set your immune system either, Rituxan definitely sounds like it has good potential and like you say, if you don’t tend to respond typically to drugs then who knows what will work for you!

Very exciting re. the wedding venue 🙂 finding and booking the venue is definitely the hardest part, once you’ve done that everything else will seem like a piece of cake! It’s tiring work, but fun!

I’m not doing too badly thanks, am still on the Actemra and it seems to be keeping me afloat-not symptom free by any means but I think I’m getting slightly better after each infusion so just hanging in there!

I’m starting to remember again though – it wouldn’t be so bad if things ran smooothly but I was told to expect Humira in 3-4 weeks and I think that was over 9 weeks ago now. It just prolongs the whole ‘trial and error’ process and makes the BMT option seem appealling again… then maybe I’d get to see the back of all this.

We’ve taken a bit of break in thinking about the Wedding, there’s just so much to think about in the run up to Christmas and then hospital appointments too. Which is fine with us but wow, the venues like to mither! I prefer to take my time over things and get them right, especially costly things! But it is all exciting and I can’t wait to put our minds to it all fully.

I’d forgotten you were trying Actemra. It works for so many people with Still’s, I’m really curious what makes the difference between cases! I hope it does continue to get better each infusion, how many have you had so far?

Hey Laura
That’s frustrating that you’ve had to wait SO long. I had a similar wait with both enbrel and cimzia, its usually just paperwork delays. Is there a private company that dispenses the injections? For me it was Healthcare at Home-they were generally really efficient but sometimes if a prescription got held up at my hospital I’d end up waiting around for ages. Felt like I spent half my life chasing them up!
Anyway yes its definitely interesting how different drugs work for different people with the same diagnosis! Actemra is definitely working for me (at least partially), but I guess I just have to see how it pans out-difficult to know how things will go in the long-term!
Hope you hear back re. Humira soon and good luck for your BMT appt.

You now have so much practical experience with biologics you could be an advisor yourself. I have a friend who has gone through a lot of them also as her RA is so aggressive and wily. Good thing you got that 7 years out of the Enbrel to help with the progress of your life.

In the groups I follow there have been a few people who went into remission while pregnant. Of course that is the hope
Good wishes with the Humira. That’s what I am taking

My Still’s Life

My name is Laura and I was diagnosed with Still's Disease at the age of 19, with previous diagnoses of Dermatomyositis at 14 and Post-Viral Reactive Arthritis at the age of 3. Life is a bit of a rollercoaster to say the least, but I'm happy to say that I have had my fair share of highs with the lows. I have currently been off work for over 18 months due to a severe flareup and was getting bored, so I thought that I would try and put my mind to something constructive.

I have tried numerous drugs to treat my Still's over the years, including:

Unfortunately, having one autoimmune disease can lead to other health problems and I have also developed Hidradenitis Suppurativa, Gastritis, Anaemia of Chronic Disease, MVP, PCOS and Migraine, which I post about from time to time.

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Food For Thought

Toughness is in the soul and spirit, not in muscles.

~Alex Karras

The block of granite which was an obstacle in the pathway of the weak, became a stepping-stone in the pathway of the strong

~ Thomas Carlyle

Strength does not come from physical capacity. It comes from an indomitable will.

~ Mahatma Gandhi

You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'